Passionate Equanimity

THE KELLEY/GONZALES PROGRAM is based on the simple premise that digestive enzymes dissolve all organic tissues, including tumors. And therefore, megadoses of enzymes, taken orally, will have a tumor-dissolving effect. That much is scientifically documented, and indeed, sports doctors have been using enzymes for years to dissolve diseased and injured tissues. The central part of the Kelley program is thus the ingestion of a large number of pancreatic enzyme pills six times a day (including once during the night). The enzymes need to be taken between meals, on an empty stomach, otherwise the enzymes would not enter the bloodstream to dissolve the tumors but would instead simply dissolve the food.

The Kelley program is now run by Dr. Nicholas Gonzales in New York City. Nick, as we knew him, is a highly intelligent, extremely knowledgeable physician who got his degree at Columbia and trained at Sloan-Kettering. While studying various cancer treatments, he came across the work of Dr. Kelley, a dentist who claimed to have cured himself, and some twenty-five hundred other patients, of cancer, using pancreatic enzymes in conjunction with diet, vitamins, coffee enemas, and other standards of the alternative health movement. But it was the pancreatic enzymes, in megadoses, that distinguished the Kelley approach.

Kelley eventually went rather bonkers – paranoid schizophrenic, from what I can tell – and from what we could gather from Nick, Dr. Kelley is still out there somewhere, talking to little men from other planets. Far from upsetting either Treya or me, we found that part of the story strangely reassuring. We had tried all the treatments that sane men had come up with.

Nick looked through the thousands of case histories compiled by Kelley, and tossed out all the ones that weren't well documented, no matter how impressive they might have been. He settled on fifty representative cases that had ironclad medical documentation, and presented this as a thesis at Sloan-Kettering, with the chairman of his department serving as his advisor. Some of their results were astonishing. For example, the five-year survival rate for Treya's general type of metastatic breast cancer is exactly 0.0%. But in these fifty cases there were already three five-year-plus survivors (one seventeen years)! Nick was so impressed that he ran Kelley down and studied with him while he was still lucid. Only recently – about eight months before we first saw him – Gonzales had started his own practice based on Kelley's ideas. I would like to emphasize that this was not a Mexican fly-by-night clinic (although we would try those too if we thought they would help); Gonzales is a highly trained physician trying a very promising alternative approach to cancer management, fully complying with the laws of medicine in the United States.

The central diagnostic tool that Gonzales used was a blood analysis for various cancer markers in the body. This test claimed to be able to tell the location and extent of various tumor activities anywhere in the body. Before we met Gonzales, before we told him anything about Treya's case, this blood test indicated that she had extensive tumor activity in the brain and in the lungs, with probable involvement in the lymph and liver.

At the time of that test – we had just returned from Germany, and had just started the Kelley/Gonzales program – various orthodox tests performed at the Denver hospital indicated that Treya had: about forty lung tumors, three brain tumors, and at least two liver tumors, with possible lymph involvement.

The crucial score on the Gonzales test, however, was the overall or sum total of tumor activity, which ranged from 0 to 50. Gonzales considered 45 or above incurable, or terminal. Treya scored 38, which was very high but not outside the range of possible benefit, even possible remission.

The extremely disconcerting thing about the Kelley/Gonzales program was that, even when it was working, or especially when it was working, it created changes in the body that were medically indistinguishable from increased cancer growth. For example, when enzymes attack tumors and begin dissolving them, the tumors flare up – a standard histamine reaction – and this flare-up, on a CAT scan, looks exactly like the tumor is growing. There is simply no orthodox way to tell whether the tumor is increasing or flaring up as it dies (other than surgery and biopsy).

And thus we began what was by far the most nerve-racking, anxiety-inducing leg of this journey. As the enzymes began to have their effect, CAT scans showed what looked like massive tumor growth. And yet Gonzales's blood analyses showed Treya's overall cancer score unmistakably going down! Who are you going to believe? Treya was either getting better very fast, or dying very fast, and we couldn't tell which.

And so we settled into a very strict routine at home, and waited.

It was right at the beginning of this period that Treya underwent another major inner shift, a type of follow-up to the shift that had led her to change her name from Terry to Treya. This shift wasn't as dramatic or pronounced as the first, but Treya felt it was just as profound, perhaps even more so. As always, it involved the relationship between being and doing. Treya had always been in touch with the doing side of herself; the first shift was a rediscovery of the being side of herself – the feminine, the body, the Earth, the artist (that, anyway, was how she viewed it). And this recent shift was more the integration of both being and doing, the bringing them together into a harmonious whole. She hit upon a phrase – passionate equanimity – that seemed to perfectly summarize the entire process.

I was thinking about the Carmelites' emphasis on passion and the Buddhists' parallel emphasis on equanimity. This somehow seemed more important to me than the age-old argument about theism versus nontheism that these two groups usually engage in, and which seems beside the point to me. It suddenly occurred to me that our normal understanding of what passion means is loaded with the idea of clinging, of wanting something or someone, of fearing losing them, of possessiveness. What if you had passion without all that stuff, passion without attachment, passion clean and pure? What would that be like, what would that mean? I thought of those moments in meditation when I've felt my heart open, a painfully wonderful sensation, a passionate feeling but without clinging to any content or person or thing. And the two words suddenly coupled in my mind and made a whole. Passionate equanimity, passionate equanimity – to be fully passionate about all aspects of life, about one's relationship with spirit, to care to the depths of one's being but with no trace of clinging or holding, that's what the phrase has come to mean to me. It feels full, rounded, complete, and challenging.

This feels very right to me, very deep to me, very central to what I have been working on for many years, going back to the name change. It's like the first part of my life was learning passion. The life after cancer, equanimity. And now bringing them together. This feels so important! And it seems slowly but surely to be permeating all aspects of my life. I still have a ways to go! But it feels like I can finally see the road clearly, on that "journey without goal."

And as for the task before me, it means to work passionately for life, without attachment to results. Passionate equanimity, passionate equanimity. So appropriate!

By and large it was chop wood, carry water, which Treya approached with calm zeal. We let our awareness be filled with the various details of day-to-day life and the incredibly demanding aspects of the Kelley/Gonzales program. And we awaited the tests that would outline our future.

Boulder
July 1988

Dear friends,

We've been back from Germany for a few weeks now, and we're tremendously enjoying the ever-changing weather of the Rockies, the familiarity of America, the rough playfulness of our puppies, having friends and family nearby.

Obviously, healing myself as much as possible is now my primary focus. My program is a mixture of the Kelley Metabolic Ecology program (supplements, pancreatic enzymes, diet, various internal cleansing programs), meditation, visualization, spiritual reading, acupuncture with a practitioner from Taiwan (of the "if it doesn't hurt it can't be helping" school) through consultation with Michael Broffman [a San Francisco-based expert on Chinese and American medicine], judicious consultations and tests with the local oncologist, exercise, and being outside as much as possible. I've begun the process of finding a local psychologist to work with and have started doing a bit of yoga again.

A daily routine has emerged out of this combination of programs-Ken gets up around five and meditates for several hours before starting the daily chores of being a support person – cleaning, laundry, groceries, and lots of vegetable juicing! I sleep as late as I can, usually nine-thirty or ten (I can never seem to get to bed before twelve). Then I begin my morning routine, largely dictated by the rhythms of the Kelley program. By the time I actually get up I've already taken two of my seven daily doses of pancreatic enzymes (six capsules), one at 3:30 A.M. and one around 7:00 A.M. When I get up later I immediately take my diabetes medication and thyroid pills. I need to have breakfast right away or I can't fit the remaining enzyme doses and mealtime supplements (over thirty pills with each meal) into the remaining hours of the day. I start off with the fourteen-grain raw cereal (ground the night before and soaked in water overnight) and Ken usually makes me one or two eggs to go with the usual huge handful of supplements. Meanwhile I've made coffee for the morning coffee enema so it can cool while I eat; I'm also allowed one cup of coffee a day because it can be good for my metabolic type. (Slow to get started!) I must admit I look forward to it...

While I eat and slowly savor my coffee and gaze out over the wooded valley below I read – lately it's been Becker's Denial of Death, Father Thomas Keating's Open Mind, Open Heart: The Contemplative Dimension of the Gospel, and Osborne's Ramana Maharshi and the Path of Self-Knowledge and The Teachings of Ramana Maharshi. It feels good to have constant reminders of different ways of looking at and approaching larger spiritual truths when I'm so constantly involved with my body and how it feels, so often frightened by the flashing in my eye or the numbness in my leg, somehow caught again and again in identifying with my body, tricked by my fundamental, basic will to live on the cellular level, again and again confusing Self with ego/body. It's tricky to put so much energy into healing, to fan the fires of life and my will to live without at the same time beginning to grasp after life, without at the same time becoming more attached to and identified with the life of this current agglomeration of living cells that this "I," whatever that is, so depends on!

After reading I do a little yoga and then meditate, simply as an offering of my time and attention to Spirit, an affirmation of my faith in something I find hard to articulate or explain. This approach helps keep me from falling into the ever-sticky trap of goal-oriented effort.

I also think of what Father Thomas Keating says: "The chief act of the will is not effort but consent.... To try to accomplish things by force of will is to reinforce the false self.... But as the will goes up the ladder of interior freedom, its activity becomes more and more one of consent to God's coming, to the inflow of grace." I usually have to insert the word "Spirit" where he says "God"; the latter is too loaded with male, patriarchal, and judgmental overtones, too much like a separate being or parent, while Spirit feels more like the all-encompassing One or Emptiness beyond form that I can somehow imagine myself absorbed into. But I like Keating's emphasis not on trying but on receiving, opening, consenting, an opening that is very active in its own way. He says, "Trying dilutes the basic disposition of receptivity that is necessary for the growth of contemplative prayer. Receptivity is not inactivity. It is real activity but not effort in the ordinary sense of the word.... It is simply an attitude of waiting for the Ultimate Mystery. You don't know what that is, but as your faith is purified, you don't want to know." This "active inactivity" is an example of what I think of as "passionate equanimity." Ken reminds me that the Taoists call it "wei wu wei," which literally means "action no action" and which is often translated as "effortless effort."

Keating recommends the use of a five- to nine-syllable "active prayer," rather like a mantra. The one I like (it's not on his list) is "Consent to the Presence of Spirit." I find that the word "consent" startles me, awakens me, surprises me each time because I so easily and so constantly fall into effort. It makes me pause in my activity, and a whisper of relaxation, of gentleness, of allowing moves through that pause. I still use the mantra "om mani padme hung" during the day [the mantra of Chenrezi, the Buddha of compassion], but it's nice to now have a mantra in English whose meaning always startles me into more awareness. I still wear the wooden rosary from the Snowmass Monastery on my left wrist and every time it catches on something, which is quite often, I try to pause, gently disengage it, notice the flash of irritation if that happens, and repeat to myself, "Consent to the Presence of Spirit." It creates a moment of stillness, of openness that I like.

After meditation it's time for the coffee enema, a generalized detoxification procedure that stimulates the liver and gallbladder to release stored toxins and wastes. It's a component of many alternative cancer treatments, including the Gerson program, and these enemas have been used safely for over one hundred years. I know that for me they feel good and intuitively right. I remember how years ago I let my oncologist at the time scare me away from them even though they provided a lot of relief from painful effects of chemotherapy on rectal tissue. He made a forceful, disapproving comment about these enemas causing electrolyte imbalances. Only later did I realize he probably didn't know much about them and that if such a thing had been proven it was probably in tests where enemas were given twenty times a day!

The enema takes about thirty minutes and I use the time for visualization, with a tape of Goenka chanting in Pali playing in the background. Depending on how things feel that day, I may visualize in a directive, goal-oriented way, seeing the tumors being digested, killed, and cleared away. At other times, when I feel the need to be open, to question and explore, I dialogue with the tumors, asking questions, seeing if they have anything to say to me.

In the first case, I actively imagine the enzymes attacking the tumors (I do this one at a time, starting with the brain tumor then moving on to the large lung tumor). I imagine the tumor being softened by the enzymes, which enter through the bloodstream but most strongly from the lower right. I imagine the cells being digested by the enzymes and at the same time imagine my immune system helping kill these weakened cells. I see the tumor being killed from within, the black area at the center growing larger, the surrounding swelling diminishing, and sometimes I see the tumor collapsing in on itself as more and more dead cells are cleared away from the center.

When I actively dialogue with each tumor, it's a different process with a different feeling tone. First I check to see if anything has changed since the last time. Then I may ask if the tumors have anything to say to me, such as confirmation of what I am doing or suggestions for something different. What I see and what I hear has been almost uniformly positive – I don't know if it means anything objectively, but at least it tells me I'm feeling hopeful on deeper, less conscious levels. The tumors have said things like "Don't worry, it's going to be OK," or "Don't worry if you get some strange symptoms, things will be changing in here, the shape of the tumor will change and press on different areas, but it doesn't mean anything, don't worry about it." Only a few weeks ago the brain tumor told me, somewhat apologetically, that it didn't want to hurt me, it certainly didn't want to kill me, and thus it was glad I was trying the enzymes because somehow it just couldn't give in to radiation or chemotherapy (it has proven fairly resistant to these) but it thought it would be able to give in to the enzymes, to please give this program a chance, at least three months!

Again, I hold all of this lightly. I don't know if the information and advice I get in this manner has any objective truth to it, but I find it helpful to connect with these different voices in myself, to better understand what is going on internally, below the level of everyday consciousness, and I do pay attention to the inner advice that comes in this way. Many times the tumors are silent or feel unapproachable. I always ask the help of Mother Mary and the Little Old Man of the Mountains (who looks suspiciously like a German doll I impulsively bought in the airport – he has a big gray beard, green loden-cloth jacket, and knapsack on his back). They have become my guides on this inner journey and are a most welcome source of comfort and companionship. If I wasn't inventive enough to have imaginary playmates as a child, I'm making up for it now!

After the coffee enema it's time for enzyme dose #3 (they have to be separated from meals by an hour or the enzymes will happily go to work on food and not make it into my bloodstream). I take the dogs for a short walk, clean up a little, and suddenly it's time for lunch, which Ken whips up. I was surprised by the diet Dr. Gonzales outlined. It's actually much broader than the semimacrobiotic diet I was on, which is a relief since I had anticipated an even narrower diet in some ways. I'm classified, on the basis of hair analysis and blood tests, as a Moderate Vegetarian Metabolizer, one of ten metabolic types (the program, especially the diet, is slightly different for each type). This means I do well with vegetarian protein (I've been a fish-eating vegetarian since 1972) but do better with some lean animal protein (eggs, cheeses, fish, poultry, occasional red meat). My only transgression on this program so far (I've been on it twelve days) is that I haven't gotten around to eating red meat yet! Quite a hurdle to overcome. I have to actually eat it! I wonder how it will taste... what it will be like to chew beef once again... and of course my father, a cattleman, is delighted by this strange twist!

The diet is 60% raw (I find this difficult to manage), at least four servings of vegetables a day, fresh vegetable juice almost every day (carrot juice for nondiabetics), whole grains, the fourteen-grain raw cereal five times a week, eggs and dairy products (my type can handle the cholesterol easily, but I'm to avoid yellow cheeses), nuts and seeds, lean poultry twice a week, lean red meat once a week. I'm also allowed three servings of fruit a day, but that's impossible for me unless I'm on insulin. I'm to avoid alcohol, especially for the first three months, though an occasional glass of wine is OK. Nutrasweet is considered unfit for human use, but a small amount of saccharine (this because I'm diabetic and can't use the fruits and honey that are allowed) is OK. I can't tell you how much difference that one package of sweetener makes to me on a daily basis....

OK. "With lunch another big handful of pills goes down again, though sometimes most reluctantly. I was once able to take a whole handful of pills in one gulp. No longer. Now they go down one by one or, if I'm feeling daring, two by two. Nothing like getting a pill caught part way down at 3:30 A.M., especially one whose contents are as delectable as pork pancreatic enzymes. With all of these procedures, including the enema, I use only water filtered by the reverse osmosis process or distilled water.

An hour or so after lunch I have dose #4 of the enzymes and two hours later dose #5 (no snacks or the enzymes get diverted). An hour after dose #5 I make a before-dinner glass of vegetable juice with the Champion juicer. Then we have dinner – Ken usually cooks something wonderful. He makes fabulous vegetarian pizza with a quinoa crust, scrumptious vegetarian chili and ratatouille, chicken primavera and Thai fish. He's still trying to figure out how to cook red meat! Then we watch videos and cuddle on the couch many evenings, dogs and all!

Ken does the shopping and the laundry and the house chores, which is extremely helpful because the enzymes make you so tired. He's always there for me, steady, available when I need him, cute, and loving. We cuddle together in the evenings and wonder what's happened to our lives. We're getting our wills in shape, just in case. It's just what is in our lives. We're furious and upset and angry that this is happening to us, that it happens to anyone at all, and we've also learned how to breathe deeply, how to accept what is (at moments, at least!), how to enjoy life as it is, how to appreciate the moments of connection and of joy, and how to use this terrifying, heart-wrenching experience to help us stay open to life and grow in compassion.

It's odd to buy a new car (a Jeep Wrangler) with a six-year warranty and wonder if I'll be around when the warranty runs out. It's odd to hear people making plans five years ahead and wonder if I'll be around then. It's odd to think I'd better not put something like terracing the garden off until next year because I may not be around to enjoy it. It's odd to hear friends talk about a trip to Nepal and realize that I can probably never go, that the risk of catching something that would divert my immune system from fighting the tumors is too great. Well, I've done a lot of traveling in my time, though never to Nepal. Ken's always saying I move around too much anyway, so this is my chance to see what changes staying closer to home will bring to my life.

To finish my pill-dominated day, three times a week I go for an acupuncture treatment, a process that takes around two hours. Then it's another blood sugar check and with dinner another handful of thirty more assorted pills. Enzyme dose #6 comes an hour later, then 45-60 minutes on the exercise bike, followed by enzymes #7 and a short meditation before going to sleep. I take a final set of pills at bedtime (this includes the anti-estrogen agent I take) and check to be sure the alarm is set for 3:30 A.M. This goes on for ten days, then I get five days to cleanse and rest when I take no vitamins or enzymes (though I continue enzymes and HC1 with meals). This cycle of ten days on and five days off is the generally prescribed pattern, since during the time off the body can "catch up with the toxic load resulting from physiological repair and rebuilding." The first five days off I also do a "clean sweep protocol," taking high doses of psyllium seed husks and bentonite clay solution three times a day. The psyllium is supposed to work its way through the large and small intestines, forcing out wastes stuck in little nooks and crannies, while the bentonite absorbs toxins from the gut. I'm now on day #2 of this program. My next five days off I'm supposed to do a liver flush. Nondiabetics use apple juice but I will dissolve the ortho-phosphoric acid in plain water and drink four glasses a day. At the end I take Epsom salts, an enema, more salts, and then – whoopee! – a dinner of heavy whipping cream and fruit. Olive oil before bed, ugh. The acid is supposed to remove calcium and fats from arteries and soften and dissolve gallstones. Epsom salts relax the sphincter muscles of the gallbladder and bile ducts, allowing the stones to pass. The cream and oil make the gallbladder and liver contract, forcing wastes, bile, and stones into the small intestine. Quite a process... something to look forward to!

Ken and I both liked Dr. Gonzales. His office is a mere block and a half from my aunt's apartment in New York. He says 70-75% of his patients do well on the program, which I believe means they are eventually cured or manage to hold their own against the cancer for a long time. Since I have quite a lot of cancer in my body still, he says I probably have a 50% chance of responding well to the program, though he feels my chances are actually higher than that because of my determination and understanding of the program.

Through a special kind of blood test they test the strength of different organs and body systems and whether or not cancer is present. This shows the body's weak points and helps determine the vitamins and organ extracts prescribed. I won't go into the details, but the results of my test were completely consistent with where the cancer actually is and with the expected effects of chemotherapy; all of this before the doctor ever saw me or my records. They also give you an overall score for the amount of cancer in the body and this is the test they use to follow your progress on the program. Dr. Gonzales said most of his patients score between 18 and 24 and that he considers a score of 45 to 50 incurable. My score was 38, which is quite high but still with a good chance for a response. He said he's had patients who scored 15 who didn't make it and others who scored in the high 30s whose bodies were incredibly efficient at breaking down tumors once they started the program. We'll know more about my chances after a month on the program, he said. He'll probably do another blood test then, and how I feel will also tell us a lot about my response. Dr. Gonzales says that often people feel simply terrible on the program, almost like they're dying, before they start getting better. Every time I complain that I'm feeling tired, Ken says "goooood!" – no sympathy from that quarter. So far I have indeed felt quite tired, which means my exercise program has been curtailed and I've started taking insulin.

I do know that when I think ahead to the possible outcomes of this situation or when I think of the time of my death, whenever that moment comes, I know I will feel more at peace if I feel sure about the choices I made along the way, if I know that at the time I made each choice I was not unduly influenced by the beliefs of others around me, that the choice truly felt like my choice. I felt like the Scheef program and the Kelley program were my choice, definitely. But I felt I was too influenced by various doctors about having a segmental at first; I believe I would have chosen a mastectomy if I listened more to my own voice, and then gone to Livingston-Wheeler. My main advice is always to beware being knocked off center by what doctors say (they can be terribly convincing about what they do and terribly close-minded about non-traditional approaches), to take the quiet time to be clear about what you want and what you are intuitively drawn to, and to make a choice you feel is yours, a choice you can stand by no matter what the outcome. If I die, I have to know it is by my own choices.

I just completed the design of another fused glass plate, which feels satisfying. I now write "artist" when asked for my occupation!

I've taken as my practice lately (1) mindfulness and (2) surrender. Sort of combining a Buddhist practice and a Christian practice, in yet another way. I recently attended parts of Naropa's Christian and Buddhist Meditation conference and found it fascinating. For those who don't know, Naropa is a contemplative college here in Boulder originally founded by students of Chogyam Trungpa, Rinpoche. Ken is on the Board of Trustees, as are Lex Hixon, Jeremy Hayward, and Sam Bercholz. They have some very exciting and innovative programs, with a strong emphasis on psychology, the arts, writing and poetics, and Buddhist studies.

The main result of this conference for me was a growing sense that I'm beginning to cleanse Christian words and phrases and ways of describing mystical experience of the negative connotations that have always kept me from feeling comfortable with words like God or Christ or sin or surrender. In fact, I found the little phrase I use in meditation as my "Christian component" has changed from "Consent to the Presence of Spirit" – safe, ecumenical, no real buzzwords, though "consent" was even a challenge to me then – to "Surrender to God." Straightforward, direct, composed of what were once two major buzzwords for me. But now I love it! It is exactly what I need. The shock value, a holdover from what those words once meant to me, wakes me up. It brings me back to mindfulness. I find when I practice this, when I repeat this phrase, I suddenly let go of whatever was preoccupying me, my awareness opens and expands, and for a moment I suddenly see and feel the beauty and energy all around me, pouring into me, extending out to infinity, to all space, and the word "God" makes me think not of a patriarch but of vastness and emptiness and power and completeness and everlastingness and fullness.

Basically I'm doing quite well. My morning [spiritual] routine provides stability and comfort and constant reminders that, in spite of all the attention I pay to my body, I am not this body. I like being reminded of "the unconditioned, absolute Being that you really are," even if I'm far from directly experiencing that. I like being reminded that "all effort is simply to get rid of the mistaken impression that one is limited and bound by the woes of samsara (this life)." I like hearing Ramana Maharshi talk about trusting God, how "if you have surrendered it means that you must accept the will of God and not make a grievance of what may not happen to please you." I like being reminded that "You thank God for the good things that come to you but you don't thank Him for the things that seem to you bad; that is where you go wrong." I do have the feeling that my having cancer has somehow "set my destiny in motion," a phrase a friend used about her own life that I responded to. I remember another friend who had cancer sharing his new artistic creation – I was blown away by its power and beauty – and afterwards saying "You know, I sort of hate to say this, but I wouldn't have found these depths within me but for this cancer."

I don't have any idea what lies ahead. It may get easier, it may get a lot tougher. I may be able to coast along for a while, or a sudden change might find us in the middle of some other treatment. I realize that I haven't yet had to deal with pain or with impaired functioning of any kind, and I don't know how brave or how accepting or how calm or how thankful to God I'll be when/if that happens.

These letters were never intended to become a continuing series. I was simply too lazy to write to everyone individually but wanted to keep in touch. Now they've taken on a life of their own and even if no one else were to read them I'd probably still write them! And I have included all these details about tests and confusing results and conflicting opinions and difficult choices not because the numbers or the results or even the choices I've made are important but because the details of the dailiness of living with this disease brings alive generalities like "living with cancer is an emotional roller coaster," "treatment choices are harrowingly difficult," "we can't plan ahead past next week," and "this will go on and on until the end." Others' stories are different in numbers, details, pace, and outcomes but, all in all, not so very different in feel. It's a bumpy ride.

Certainly at those moments when I wonder if it's all worth it, is life really so great to be fighting so hard for more, maybe I'll just give up if it becomes too hard – and I do have those thoughts, quite regularly – one thing that sustains me, that makes me want to carry on, to explore deeper, is the process of committing what I experience and what I learn and the ways I am challenged to paper. In fact, Ken asked me just the other day if things got really bad, would I continue with these letters? I immediately said "Yes, of course. In fact, I've thought that this might be what would keep me going even if I were in pain, what would keep me from choosing an easier way out, keep me believing there was still value in living day by day even if I were in a lot of pain and the end was obviously near." I would still be trying to let you all know what it was like for me, still trying to use my experience to reach out to you in hopes that sharing might somehow, someday, be helpful to someone else.

Time to sign off and move on to the next letter! I apologize about not being better about answering letters or returning phone calls, but I'm sure each of you understands and I assure you that Ken and I feel the support of all of you out there every day in many ways!

With much love,
Treya

The bumpy ride – the really bumpy ride – began. Almost immediately conflicting medical reports started pouring in. Orthodox medical tests began showing rapid tumor growth in Treya's body. But these tests were also perfectly consistent with what we would expect to see if the tumors were being dissolved by the enzymes.

I had a scare yesterday, a bit of a restless night because of it. My Denver doctor called with the results of a test – the cancer embryonic assay, or CEA, which measures the amount of a protein in cancer cells circulating in the blood and thus indicates the amount of active cancer in your body. My test in January, when I was diagnosed, was 7.7 (0-5 is considered normal). After the first treatment in Germany it was 13 and just before I left in May it was 16.7. We're supposed to watch these tumor markers for indications that the tumors are growing, and if they are must consider the next step to take. Well, my latest test was 21. Did this mean things were active again? Did it mean that the brain tumor, which should stay stable for two to three years, was growing? That my immune system wasn't able to hold things steady? That I might have to reconsider ongoing, monthly chemotherapy? I've only been home two weeks, I said to Life. Come on, give me a little more of a break than this!

Fortunately Ken and I reached Dr. Gonzales in the morning. He said not to worry at all about the CEA. "I have patients with CEA's of 880 and 1300 who are doing fine. I don't even begin to be concerned with it until around 700." He warned me that on this enzyme program the levels might go much higher as cancer cells are broken down and release the protein the test measures. This is "no big deal," he said. "It can go from 300 to 1300 in two weeks and orthodox doctors get freaky. Twenty-one indicates some activity but it is not high." You can imagine the wave of relief that flooded through me. I was also relieved when he assured me that the treatment works in the brain since the enzymes do pass through the blood brain barrier. (I've recently discovered that most of my "reserve" treatments – tumor necrosis factor, Burzynski's antineoplastins, and the monoclonal chemotherapy – do not, alas.) Dr. Gonzales sounded so confident, I immediately felt better. I hope he's right, I hope this treatment works. At least now I feel a little more secure about it, which will be important when we meet with my more orthodox oncologist next week to review all the tests and hear what he recommends next.

The orthodox recommendation was to immediately go on continuous chemotherapy; or, more drastically, to go on extremely high-dose chemotherapy – so high it would kill the bone marrow – and then do a bone marrow transplant (an overall procedure generally thought to be the single most grueling treatment around). We anxiously awaited the blood analysis from Gonzales, that special test that would determine, according to Gonzales, if the tumors were growing or in fact dissolving.

The enzymes seem to be working, hooray! The first good news we've had in a long time. I sent in another hair and blood sample after a month on the program and my cancer score dropped from 38 to 33 – the biggest drop Dr. Gonzales has ever seen in only one month on the program. I also started taking anti-estrogens at the same time, so some of the reduction may be due to them (I spoke to one woman recently who said her lung spots disappeared completely when the only treatment was an oopharectomy [removal of the ovaries]). Ken and I were delighted at the news from Dr. Gonzales!

My enthusiasm was a little tempered by a new symptom in my right arm which may come from the tumor pressing in a new place, but I remember the visualization session where I was told not to worry if strange symptoms came up, they might be due to the tumor changing shape as it's eaten away. These inner communications continue to be positive and upbeat; the feeling that keeps coming up – even in the face of troubling symptoms – is "I'm going to be all right." This is not positive thinking, there's no feeling of force or even of intention behind these thoughts, the thoughts just come of their own accord. It's reassuring, even if it doesn't accord with orthodox test results!

This entire situation was driving me nuts. Who ya gonna believe? I took the dogs for a walk that day, and this is what went through my mind:

I'm a trained biochemist, and what Gonzales says about the orthodox tests makes sense. When tumors dissolve they do release the same types of waste products as tumor growth; the orthodox tests can't easily differentiate them. Even a trained radiologist can't always differentiate tumor growth, histamine flare-up, and scar tissue.

But what if he's just leading us on? Trying to make us feel good? But why would he do that? Our orthodox oncologist thinks it's for money, but this is ridiculous. Gonzales charges a flat fee up front. Whether Treya lives or dies, he's already been paid!

Moreover, if he is feeding us "feel-good" news and it isn't true, he knows we are going to find out soon enough and possibly become quite legally nasty about it. Treya even asked him, as Treya would, "What if you are wrong, and what if we decline orthodox treatment based on your recommendation, and then I die? Can't my family sue the daylights out of you?" And he said, "Yes, they can. But the reason this program is still operating in the United States is that it has a very high success rate. If not, then both me and the patients would be dead!"

Moreover, Gonzales has his own reputation to think of; when his patients start failing on his program, he immediately recommends orthodox recourse. He wants Treya to live as much as anybody. And he is confident Treya is not only not failing, but rapidly improving.

Either he's mistaken about the test, or he's lying. He's not lying – he's got too much to lose. Is he mistaken about the test then? Why does he put so much faith in it? I know he's worked with the test in hundreds of cases, and he must have found, empirically, that the test has a very high rate of accuracy. Not 100%, to be sure, but enough for him to hang his career on, at least when combined with the other tests he uses. If the test didn't work well, he would have definitely found out by now, or at least found out its rate of error, which he would then most definitely take into account when making recommendations that he will be held medically and legally responsible for. Nobody puts as much on the line as he is, unless it's based on something that you have worked with long enough and well enough to be able to trust with good reason. We could without doubt hang him if he's wrong and he knows it!

And, from what we can tell from outside sources – his files are open to qualified researchers – about 70% of his patients either get better or stabilize. And in each case that we can determine, the blood test analysis matches accurately their status.

And that was when I began to realize that this crazy program just might work.

Treya, who made up her own mind on these issues anyway, also had the same realization. But neither of us would let ourselves believe it at this point. We continued to assume she had less than a year, simply because to assume otherwise would set us up for cruel disappointment. But moments of optimism started to creep through. And so we decided to spend a month in Treya's beloved Aspen, which was now only four hours away by car.

A month in Aspen!!! I see it as a month to rest, a month to enjoy life, a month to not have to call doctors or schedule tests or research options! A month's vacation from all this cancer stuff, a month to hike, a month to go to concerts, a month to see friends, a month to be outdoors, a month to be with my family... WHOOPEE! Just push all this stuff aside as much as possible, let the research papers on tumor necrotic factor and monoclonals molder on the shelf, and simply enjoy life!

At the last moment before our departure for Aspen Ken discovered a two-week Buddhist meditation retreat in northern Canada that he felt strongly called to do. I was delighted because he said it's the first thing he's excited about since the diagnosis of my recurrence in January. This whole year has been incredibly difficult for Ken – not just the pressure of being my main support person but also the constant stress of the possibility of my death, our discussions of the future, our review of our wills. So I was overjoyed that he discovered this retreat and I've spent this time with my parents and my sister and the puppies. It's been lovely, a nice break from Boulder where I felt I was beginning to lose my never-ending battle with details, details, details.

Will the enzymes work? Is Gonzales right, and they are? I don't know. I hope so, but I've had so many mixed feelings being here. It hasn't been a vacation, pure and simple. On my drive over I cried at the sheer majestic beauty of Independence Pass and the next day when I went to my meditation cabin I cried at the simple beauty of the sun shining through aspen leaves. Neither of those moments would have happened if I hadn't been aware I might not be around to see these things next year. All this beauty makes me so appreciate life that I just can't help but want more and more of it! It's hard not to cling, not to feel attached when I'm surrounded by things like the cleansing sound of a crystal clear stream shaded by tall cotton-woods, when I hear the distinctive soft flutter of a breeze through a stand of quaking aspen trees, when I'm mightily entertained by the bounding gracefulness of Kairos excitedly chasing critters through the green undergrowth, when I look up at night and gasp at the unexpected clarity and brightness of myriad stars in a sky that seems suddenly crowded. Yes, I sometimes feel very attached to life, especially in Aspen.

In being here I am constantly reminded not only of my attachments but also of my new limitations. That's hard. When I hear about exotic places my friends have been, or when Ken calls to tell me there's a retreat in Kathmandu he wants to take me to, I immediately think of the germs, the dirty water, the fact that I can't risk getting a simple cold: the troops are already fully engaged with cancer, no spare soldiers available for the common cold, much less something more exotic and challenging to the immune system! I'm afraid my travels will be limited from now on....

When I go out, I need to do a lot of planning for each trip, each excursion, even for each day. I have to remember the insulin, time the enzymes, be sure I have all the pills and water with me, carry a sweet snack at all times in case my blood sugar goes too low, carry extra warm clothes everywhere, etc., etc. The need for all this planning tends to feed my obsessive side. I find the stray thoughts that distract me most in meditation go something like this: Did I take those early morning enzymes or not?... Let's see, if I took my morning pills at twelve then I have to eat by one or at least have a snack by then because of the insulin.... If I didn't take those early pills, how can I squeeze another dose in today?... Must remember to stock up on insulin and get a refill on both types of anti-estrogen pills before I go to Aspen.... I've got to go by the hospital for copies of those tests to send to M. D. Anderson.... Maybe I'll try changing the insulin dose tonight, my fasting sugars are too high... etc., etc., etc. It's all junk, my planning mind invading time set aside for other purposes, monkey mind, monkey mind. At times I'm irritated by it, at times amused, and sometimes it even shuts up for a while!

The retreat I went on – the first time in almost three years that Treya and I had been apart for more than a few days – was a Dzogchen retreat. I returned to Aspen and joined Treya there. We still wouldn't let ourselves believe the enzymes would really work, and Treya wondered aloud if she would ever see another spring, but her joy and passionate equanimity seemed always to surface sooner or later, and I was even getting slightly giddy with happy thoughts.

Many wonderful things happened during my time in Aspen. One was John Denver's wedding to Cassandra – Ken and I both think she's wonderful and delight in her Australian accent. The wedding took place on a high meadow in Starwood almost completely surrounded with jagged mountain peaks dramatically lit by the late afternoon sunshine.

Another was Ken's return, revitalized and inspired after his retreat in Canada. Before Ken left, he said, I'm not really sure why I'm doing this. This was the first time I'd ever seen Ken just take off. He said he didn't understand it himself. But the retreat, given by Pema Norbu Rinpoche, turned out to be the highest transmission in all of Buddhism, a very rare and special event. It's been given in the West only twice, and there are only a few teachers in the world who can give it. The retreat itself sounded grueling. Ken received over a dozen empowerments, or spiritual transmissions, during those two weeks. He was very different when he returned, more at ease, more peaceful.

And other wonderful times. The time spent with my family just hanging out and allowing everything to be done for me. Yet another was the annual Windstar Foundation Symposium, Choices III, which this year was held in the Music Festival tent and was a wonderfully inspirational, joyful event.

On Saturday night Tom Crum, cofounder of Windstar, put together a special evening on the "State of Our Planet" which closed with a segment on changing perspective – statements by about six people on how changing their perspective helped them deal with personal challenges. About how inner psychological or spiritual shifts had helped with outer difficulties.

Tommy had asked me to be one of these people and I immediately knew I had to do it, much as I was unnerved by the whole situation! When I dialogued with my tumors during visualization/active imagination sessions, the lung tumor told me repeatedly that I need to speak out, especially about this cancer experience. The other voice that speaks through that tumor is quite terrified about doing this and says it needs to be convinced through experience, through my taking action, that speaking out is not as terrifying as it imagines. So, I accepted the challenge immediately if also somewhat fearfully.

Our talks were limited to three or four minutes. I gave mine and got a standing ovation! After my talk, John [Denver] sang "I Want to Live," a beautiful song, and when he was done he said, "That was for you." It was a wonderful, wonderful time!

Later we had dinner with John and Cassandra. Ken and John seem to really enjoy each other. When we got back to Boulder, Cassie came and had lunch with us on our balcony, and she broke the news: she's pregnant! I felt a little sad because that's out of the question for me, but I was so happy for Cassie and John! Ah, life goes on....

Back in Boulder, we sent in another blood sample for Gonzales for yet another analysis. The results came back and, of all things, her score had dropped another five points! Gonzales himself couldn't believe it, and had the lab run it again. Same results. He attributed it to the "steady zeal" (passionate equanimity!) with which Treya pursued the program. Indeed, he began mentioning Treya to his other patients as an example of how to do it right. We began getting phone calls from people on the program, and we were glad to give advice where we could.

And how are the enzymes working, you may be wondering? Well, according to Dr. Gonzales's "funny little test" (that's what he calls it), very, very well. From a beginning point of 38 (he usually doesn't take patients with scores over 40), I'm down to 28 in a mere two and a half months!

I'm not going to get my hopes up, however. Work hard without attachment to results!, that's my motto. But it is wonderful to allow myself, every now and then, to think I might grow old, or at least a little older, with Ken, with my wonderful family and friends. I might even outlive the Jeep's warranty!

Treya's family came to visit us, and as they were leaving, I saw them to the door, and yelled after them: "You know, I just think she might make it! I really do!"

I poke my head into the room. "Treya?"

"Ken?!

"Treya! Jesus Christ, where have you been? I've been looking everywhere for you! Where have you been?"

"Here." She looks at me tenderly. "Are you OK?"

"Yeah, sure." We kiss, hug, clasp hands.

"I see you brought him."

"Huh? Oh, more like he brought me."

"Now listen very carefully," the Figure says.

Дата добавления: 2015-10-28